Thursday, November 28, 2013

Happy Thanksgiving to our US Friends!

Since today is Throw Back Thursday AND it happens to be the US Thanksgiving Day celebration, I thought it was the perfect time to bring back a post from 2010 that was written on the Canadian Thanksgiving of that year. 

Happy Thanksgiving and here is a list of many of the things that I am still thankful for today!

Its been a bit since I sat down and thought of all of the great things that I am thankful for from the diabetes world but I guess today is the perfect time to do just that! So without further ado and in no particular order, I am thankful for.....

1. Insulin and Sir Frederick Banting...without which my son would not be here with us today!

2.  The incredible diabetes team that has helped us grow to this point.

3. My new support team at home whose strength and willingness to learn and understand makes life that much easier for me.

4. The amazing friends that I have made because of this horrible disease.  They have been with us through the good and the bad with wisdom, a shoulder, or a kick when needed.

5. The technologies available to us to keep my son as healthy as possible. 

6. living in a province that helps me to be able to afford at least some of these great new advances in technology. 

7. a son that for the most part is pretty compliant and is slowly beginning to understand his body and the importance of keeping it healthy...even if he does try to ignore it now and then. 

8. family who watch out for my child with diabetes and are there for both of us when we need them. 

9. insurance that allows us to pay for test strips and insulin without having to worry about using the grocery money for him to survive. 

10. the ability to share our story and our frustrations with so many people who are struggling down the same river we are, knowing that somehow we will all reach the shore in one piece. 

Have a wonderful Thanksgiving everyone! May your bg levels remain stable, may you enjoy a day with loved ones, and may your meals be feasts to remember!

Wednesday, November 27, 2013

Diabetes Christmas Gifts

Depending on where you live, you may already be inundated with Christmas music, Christmas decorations, and Christmas shopping lists. For some, November is way to early to be thinking of such things. For others, it’s the perfect time to get prepared.
Personally I fall into both categories. Every fiber of my being says, “No!! Stop!! Its way to early to even think of such things as Christmas.”  A tiny little voice however makes its way into my conscience and reminds me that while Christmas is just under a month away and many of my gifts have to be mailed.  This means that thinking about Christmas now so that I have gifts  bought and shipped before the 25th of December is not really a bad thing.
If you are like me, coming up with new and interesting gift ideas each year is a real challenge.  Many people buy what they really need when they need it and what sort of other “stuff” do you buy for them? Hopefully I can help with some gift ideas for those on your list that are involved in some way or other with diabetes.
Earlier in the year I was given the chance to review and read three great books.  Life is Short Laundry is Eternal by Scott Benner is the perfect gift to give to…well anyone! This book is not about diabetes, it’s about love.  It was a book that was absolutely not what I expected and brought an incredible array of emotions. I would still highly recommend it to anyone with a family or ever thinking about having a family.
The second book is a must read for all parents of children with diabetes.  Moira McCarthy’sRaising Teens with Diabetes is a great resource for parents of small children who wish to learn how to prepare for the teen years. This is also a great book for those of us knee-deep in the trenches of the terrible teens.
Finally, there was Gary Scheiner’s latest book Until there is a Cure.  Again, this was another fabulous book by a very knowledgeable man.  If you have someone on your list who is struggling to get this diabetes “stuff” figured out, this may well be the book for them.
If books are not the route that you want to go this Christmas, don’t forget that Diabetes Advocacy also has many great gift ideas.  Looking for a diabetes blanket? The website has one of those and its one of a kind (in fact I have lost the pattern sadly for those people who were wanting to make it themselves).  There are also bracelets and necklaces to fit all ages and sizes. You can add a diabetes ribbon or a diabetes charm to further personalize any of your accessories.
Yes that last part was a shameless plug but remember that it is the sales from the Diabetes Advocacy online store that pays for the costs associated with the work of Diabetes Advocacy. That being said, no one paid me to tell you about the books however, they asked me to review the books originally but my mentioning them again is just because I really think that they are great gift ideas!
Happy shopping everyone!

Monday, November 25, 2013

The Importance of Learning

Time and time again, the importance of the Diabetes Online Community has been mentioned by myself and others.  It is an incredible place to share ideas, share accomplishments and troubles, and to simply learn no matter how long you have been at this game.

I wish my son was more involved but he remains one of the few teens in the industrial world who has minimal interest in technology and social networking. He has a FaceBook account that he reads on occasion. He almost never adds comments or posts a status. He will never send a tweet or a friends request.  He occasionally “meets” new people on his XBox but even that is minimal.  I have had friends in the DOC whose children have “friended” him but I do not hear of many conversations between them. That may change over time.  I can’t say. In the meantime, I continue to interact with friends and learn for the both of us.

The importance of continued learning struck me the other day. A good friend had asked a question about the best way to deal with a high protein meal.  She is well versed in diabetes care but was being troubled by how protein was creating havoc in the bg levels of one of her children.  With great interest, I read through the many comments and suggestions that she received.
I realized that we had had a similar issue with my son. If he had lobster for supper or a steak and salad, I was often at a loss as to the best way to proceed.  One person with diabetes stated that she didn’t bolus for protein but she would temporarily increase her basal rate.  That made a lot of sense to me and seemed relatively easy to try.

The next time that I spoke with my son I told him about this revelation.  He asked if it would work for a bacon and egg breakfast because he loves a good pan of bacon and eggs in the morning.  I said yes! The amount of added basal and the time to extend would be something that he would work out for himself but he really wasn’t adding a lot of insulin to his system at any given time.
He thought this was a great idea. I was impressed that he took the knowledge and was open to learning how to incorporate it into his own diabetes care.  He is being given a lot of information at the moment but I am proud to hear that he is also listening.  He has told me of some things that he thinks the educators are a bit out to lunch on.  I reminded him that this is his disease.  He needs to take in what they say, weigh it against what he knows about his own body and then go forward.  They may have great advice but it may not work for him. If he knows this in advance then its okay to say that it doesn’t work for him. If he hasn’t tried it, give it a shot, he just may learn something new!

Its a new road for both of us but I think we will make it one step at a time.

Friday, November 22, 2013

A Child's Cry for Change

A few weeks ago, a fellow Diabetes Advocate made a request, send him your diagnosis stories.  He felt that too many children were being misdiagnosed when a simple blood or urine test could have saved their family a lot of stress and perhaps even saved a child’s life.  Tom Karlya is now working to gather stories of missed diagnosis and present them to leadership in medicine, health agencies, and government in the hopes that change occurs; the very least being the administration of a urine test (ideally a blood test).
My son’s diagnosis story sadly falls into Tom’s criteria.  For some this story may be very familiar either because you have read it before or you have lived this yourself.  Hopefully Tom and others, through “A Child’s Cry for Change” will see this change.  In the meantime, I will take you back to the year 2000….
It was March.  In our area it was also the season for colds and flu bugs.  The snow was still on the ground but we all hoped it was leaving soon. I had a son who was now in kindergarten and germs were constantly being brought home so I really didn’t think much about it when my youngest son started to seem a little under the weather.  He was also two and due to cut his two-year molars at any moment. Experience had told me that this could make him grouchy and out of sorts so his change in behavior set off no red flags.
As time went on he did not get better. He spent more and more time demanding that I hold him while he slept. If I put him down he would wake and cry.  He was constantly soaking his diapers. We had never gone through so many at one time.  I had to put blankets on our couch to protect it from his urine.  I was concerned but he was constantly drinking so it was no wonder that his little bladder never stopped filling.
While he spent most of his time cuddled with me, making it difficult for me to deal with anyone or anything else in the house, he could manage to get up and around when he wanted. He was able to find the jug of apple juice in the fridge and drink it down when I wasn’t looking. He obviously was not quite as weak as he was pretending to be.
All of this behavior came to a head when he came out of his room with a dirty sock in his mouth.  He had white spots on his tongue and was trying to wipe them off.  Something was definitely wrong so we packed up my son and headed to our local emergency room one hour away.
My son was seen by a nurse first.  She did the initial assessment. I told her of his occasional vomiting, his constant drinking, his clinginess, and wet diapers. She thought he might have the flu.  The doctor looked him over and stated that he had an ear infection.  When I asked about the vomiting and diapers, he asked me if my son was drinking? I said that that was all he did.  The doctor said there was nothing to worry about and sent us home.
A few days later my son seemed worse. The antibiotics were not helping. Now he was constantly sleeping. He only woke to drink.  His diapers were still soaked.  I booked an appointment to see our family doctor.  He would see us at 1:30 pm that day, the 17th of March.
Before our appointment, I bought some baby food.  My son hadn’t been eating and I thought something simple like baby food might be easy for him to digest.  We arrived at our appointment before our doctor had returned from his lunch.  As we sat in the reception area, my son continued to sleep in my arms.  His little body was cold despite the number of layers of clothing and socks that I had put on him.  His breathing was now raspy and it was making me nervous.
It obviously made those around us nervous as well because the people with appointments before us refused to go in until my son was seen. When I went into the office with my son, the doctor only looked at him in my arms.  He gently touched his face and told me to take him to the hospital immediately.  The doctor would arrange for emergency blood work and x-rays but we had to leave now. He said that he was sure that my son had diabetes, ketoacidosis, maybe a lung infection.
I really didn’t know what the first two possibilities meant but I knew that they were bad.  My son was only two.  He had to simply have a lung infection. They would give him antibiotics and he would be fine. I packed him up again and we headed across to the local hospital.
My son never stirred when they poked him with needles.  The technicians had a worried look on their faces.  He never stirred when they did a chest x-ray.  I held his small body upright while they took their pictures.
When we were done we went back to the doctor’s office to wait. We didn’t wait long.  The doctor took me into his private office.  He told me that we had to get my son to the next townnow.  He was a very sick little boy.  A doctor would be waiting to see him. There was no time to delay.  We had to leave now.
My son’s father drove. My oldest son sat in the front seat beside him. I sat in the backseat holding my baby. I could not put him in his car seat. I was now terrified. I held my little boy and willed him to live. I prayed and hoped that my breath would be enough for both of us. I willed my life into his. Each breath he took was a blessing. I didn’t see the ride to the hospital. I was told it was treacherous.  There was snow storm brewing. It was not a time to be driving but this was the fastest way to the hospital.  There was no choice.
When we arrived at the second hospital the paper work could not be done fast enough for me. The clerk must have sensed my stress because she personally took me to the ward where staff were waiting for my son.  They tried to weigh him but he was too weak to stand. They put him on a baby scale and told me that he weighed 11.2 kg.  I was scared.  They hooked him up to a monitor to see how much oxygen was going into his blood. It was low. I didn’t how to fix this.
His new doctor examined him and ordered that he be moved into the Intensive Care Unit.  We blindly followed.  My son was now in amongst the elderly and dying. My mind could not take in what was happening. I was numb.  We were soon asked to leave his room and they tried to put in what they called a “heart line”. It was a dangerous but necessary procedure.
As we waited to be allowed back in, the doctor came out to talk to us.  He told us that our son had diabetes.  He told us that he had twelve hours to live.  If he survived after that then they would assess any damage that had been done and we would move forward.  They had to be careful how much insulin they gave him or they risked giving him a heart attack or causing brain damage.  For now we waited.
I nodded and went to a phone to begin to call family.  When my mom answered the phone, my voice cracked and the tears began. I asked her to tell the rest of my family. I couldn’t speak to anyone else. I sat in that little room and cried.
Eventually I was allowed back in the cubicle with my youngest son. I sat with him all night. The next day he began to stir.  He wanted the tubes removed. He would slowly come around. We would be in the hospital for two weeks. We would learn and get stronger as we prepared for this new journey in life with diabetes.
Liam Feb 2000
 If you have a story that you would like to share with Tom, please email him at Tom Karlya, (aka DiabetesDad) at In the subject line please write: My Diagnosis Story. Thank you. Together we can make a difference.

Thursday, November 21, 2013

But I'm Not Ready

I began writing this blog to share with other people living with diabetes. I wanted people to know that they were not alone in what they were going through,  This has meant that I have shared feelings as they happened--both positive and negative, real and raw.   Today is no different.
I have been going through terrible Momma anxiety and guilt about my son choosing to move back with his father.  I know in my head why he made the move that he did. My head knows that it was not personal.  My head knows that this decision actually had very little to do with me and had everything to do with being 16 and wanting to stretch his wings.  My sister kindly explained things to me and helped me to understand the thought process of a teen in this position. My heart still feels bruised. It still wants to take everything personally but it's not all about me.
"It's not all about me" is a really difficult concept to grasp for a control freak like me.  I like to think that I am a lot less of a control freak than I once was....and the scary thing is that its true! Life has made me learn to let go a lot more than I once did but I am still far from perfect (but don't tell anyone). I still would like more things to go my way on my schedule. Since my son felt that life should be on his schedule and his schedule said it was time to leave Mom, my compromise when it came to his diabetes care was that we talk each week about his readings, trends, and problems. This was fine and has worked well for the most part.
We have bumps.  I can get frustrated by what I see (or don't see). I do my best to keep my words constructive.  Occasionally I fail.  Last week my son headed off to his first diabetes clinic without Mom in attendance.  Mom, being a bit of a control freak still, had contacted the clinic, reminded said son of the appointment, and forwarded his current basal pattern and carb to insulin ratios to the nurse.  On Monday the nurse educator contacted me with my son's A1c, noted the changes she had made and let me know where she intended to take things from there.
Remember that I am a control freak.  Remember that I spent years going to that clinic and my level of diabetes knowledge was equal to or better than their's in some cases.  When we attended, they asked me what was new in care techniques.  I was the person who brought in information on Lantus, the use of glucagon during illness as well as the latest in pump technology.  Each time I have gone into any of our clinics (the one he is now attending and the last one that he attended with me), the team was always interested to hear from me what was new in the realm of treatment.  I guess that means I have a huge ego to go with my controlling personality and that can't be good.
Back to the new nurse (whom I have never met), she felt that my son would benefit from more work with a CDE and set up another appointment with an educator closer to his home.  He is off to see this person today.  The gamut of emotions I am experiencing is crazy.
The rational me says "its good that he is exposed to new ideas and new people.  Sometimes someone else saying the same thing that you have said can allow things to finally click.  He has a good knowledge of his care.  He will not easily be confused by someone else's suggestions. This is a good thing."
The emotional, still wounded momma in me says, "Whoa here!! We are doing okay thank you! I am very capable of teaching my son.  We may be apart in distance but I am still as involved as I can be.  I have managed to maintain excellent A1c's in this child for 13+ years,  Even on his own, this A1c would be coveted by a lot of parents who have teens with diabetes. Why are you pushing me out of this?"
That's what it boils down to isn't it? A momma bear who has been so ferociously protective of her children for so many years feeling pushed away on all sides.  Is it really happening? No.  The nurse from my son's clinic has kept me in the loop of what is happening and the changes that she made.  My son has kept me in the loop calling me and telling me what they talked about.  No one is pushing me out.  They are working to do the very best for my son.  They are exposing my son to new ideas.
Yes, he has already been exposed to some of the best minds in diabetes care in the world.  He knows that.  He has to be able to learn to say, "I know that already" or "thanks but this works for me because..." He is learning to speak for himself.  That is the goal for a parent--to raise strong, independent children. I told my boys to never be sheep.  Do what you feel is right. Never blindly follow.  My son knows that this also applies to his health care.  He also knows that everyone needs help now and again and that with knowledge comes power.
He is growing. He is learning. My role is changing and it is changing quickly.  That is painful.  That is my problem.  I have to adjust.  I have to remember that it's not about me. It's not personal. Its life. Its change.  It's what happens when our children grow up.
For those of you who are also dealing with these are not alone. For those who have gone before me, thank you for reminding me that this too shall pass. Change is important in all of our lives. It can be terribly difficult but change is what makes the world go around.

Wednesday, November 20, 2013

Diabetes Mine Patient Survey's telling results

Not surprisingly, I belong to the international group “Diabetes Advocates”.  Yesterday Amy Tenderich from Diabetes Mine posted a link to a graphic and asked that the advocates share or comment as they saw fit.
For me the timing of this graphic was perfect. I had just been having an online conversation with another D-Momma about something very similar. She had stated that her son refused to wear a CGM despite her wishes that he would.  I told her that my son was exactly the same.
The Diabetes Mine graphic aptly showed both my son’s concerns as well as my own issues with technology.  I thought it was brilliant!
 67% of patients find the technology too expensive. My son and I are in agreement on that count.  He is horrified to think of how much he may have to spend on his diabetes care and threatens to go back on injections if his mother has not convinced the governments to cover his pump costs by the time he needs more help.
The biggest drawback to a CGM is the high cost.  I also agree with this.  My son however is more of the opinion that it is unappealing and uncomfortable (36%) and will further complicate his life (33%) by having him have to carry or wear something else on his body.
I would encourage you to check out this survey in detail. As always the folks at Diabetes Mine have hit on some great points that impact everyone dealing with diabetes. I hope that governments and insurance companies also begin to understand what these 700+ patients have said.  Perhaps then we can see some real change and viable access for everyone regardless of age, wallet size or geography.

Tuesday, November 19, 2013

THE doctor for every teen with diabetes

A great doctor means everything in diabetes care.
Last week my son went to his first diabetes appointment without Mom.  As I said before, I had emailed the clinic. I had given them a heads up about a lot of things but I was not at the appointment. I was both surprised and impressed when a little while after the appointment I text my son, asked him how it went and he said “I will call you after.”  He was going to call and share the appointment with me? I was very pleased that he wanted to do this.
Later that evening we did talk. He told me that they had a lot to say, most of it he didn’t remember.  Again, my son is 16 and forgetting what adults say is a teen brain specialty. The nurse made a few changes.  His doctor commented on how much he had grown…and then his doctor talked, and talked, and talked to him for a full hour.  That was not unusual.  This doctor takes a lot of time with his patients and their families.  He gets to know you, shares with you and advises you.  He is wonderful.
My son was a little shocked by his high A1c (personally I was shocked that it wasn’t higher).  His doctor quickly told him that he didn’t care about that. It was just a number. (Yes you read that right! His DOCTOR said he wasn’t concerned about a high A1c!)  The doctor’s concern was with my son learning to handle HIS disease.  He wanted my child to know how to troubleshoot the issues himself.  He needed to know how much insulin to give himself, how to adjust a basal or bolus setting.  This was on him.  Now was his time to step up and learn.
I was beaming on the other end of the phone! This was what I had been aiming for as well but coming from his doctor was different from the “momma yammer”.  We do sit down and discuss strategies.  For the past few years, when making changes I would first ask him if he thought it was a bolus or basal issue.  He now had to develop the confidence to do it all on his own.  I was thrilled and reminded him that he was already doing a great job learning.
No one was suggesting that this complete transformation would happen overnight. This was his two-year plan and his doctor had told him that messing up and having a high A1c while he found his way was okay. This was a good reminder for Mom and a great message for my son.  Learn! Learn! and then when you have it figured out, go back and fix that A1c but for now learn about you, your body and your disease.
I still love this doctor and would gladly clone him for everyone else with diabetes to have as well.
d health

Thursday, November 14, 2013

A Monumental Day

Today is World Diabetes Day.  This day commemorates the birthday of one of the men responsible for my youngest son being alive today–Sir Frederick Banting.  This amazing Canadian was involved in providing us with an inject-able source of insulin–the first step on the journey to cure Type 1 diabetes.
Today is also the first time that my son is going to a diabetes clinic without his mother. Because of where he currently lives, it is not possible for me to travel to attend with him. He is going with his dad.  I received a text while he was in the office looking for some information. I had already been in contact with his new CDE and provided his basal rates and carb to insulin ratios.  The rest of the appointment is/was up to him.
While my son attending his first ever clinic appointment is a big deal for me, an even bigger deal is who my son will see today–on Sir Banting’s birthday.  He will sit and chat with the man who kept him alive on that March day many years ago when he was first diagnosed with Type 1 diabetes.
My son is returning to his first pediatrician.  This is the man who told me that the next 24 hours were critical and would tell if my son lived or died.  This is also the man who held my hand and kicked my butt to learn and gain confidence in dealing with this beast we call Type 1 diabetes.
I have said time and time again how hard it is having my children living far away from me. I have moaned and groaned about the challenges of having a teen living away and the many worries that come with that.  The best thing about his move however is this return to his doctor.
His doctor knows my son’s potential. He knows me. He has watched my son grow.  He has always encouraged my son’s independence.  He has also never been shy of telling either of us what he thought.
Today is World Diabetes Day.  Today marks the birth of the man who discovered insulin. Today also marks a full circle in my son’s diabetes care.  He began seeing this doctor as a toddler protected by his mother.  Today he sees him again as a growing young man stretching to find his way in an adult world.
world diabetes day

Monday, November 11, 2013

Exercise and Play...the diabetes way

The next two prompts for Diabetes Awareness Month Photo A Day are exercise and play.  When you live with diabetes, both require special preparations.

Last winter my son decided to begin working on his body.  He “found” exercise in a way that only a teen can.  He picked up the Body Beast exercise videos and began to tone his muscles.  This presented new challenges for us.  We had to learn how to tailor his insulin needs and extra carbohydrates depending on the intensity and length of his workouts.
body beast

Play also presents challenges…We must make sure that a glucometer and glucose are always with him no matter what he is doing.
skidoo day March 5 005skidoo day March 5 030

Saturday, November 9, 2013

An Organiation that changed my support network FOREVER


As Diabetes Awareness Month rolls on, the prompt for yesterday was “organization”.  I can’t say that I have ever been “organized” when it comes to diabetes.  There are diabetes totes, diabetes organizers, and diabetes drawers but organized they are not! Lucky for me, the first thing I thought of when I read “organization” was the groups that have had an impact on my life.  The biggest of course being this organization….
Today’s prompt is “support”…once again the same image prevails. I do not ever dare to think of where I would be without the amazing support and friendships that I have made thanks to the original Children with Diabetes parents email list.  One email asking for help brought me friendships and support beyond my wildest dreams…
Alex and Liam at beachLiam and JesseKim and Sharon 
Scott and Stacey